NHS Failing In Rare Diseases

NHS Failing In Rare Diseases

Ok, I am finally at breaking point. That point where you are seething so much at being treated like some throw away statistic, instead of a human being worth the same as the next human being.

I am going to tell some more of my story and I hope and pray that sometime my story stacked up with other stories I have heard will make some kind of difference in this absolutely abysmal system.

Yesterday I attended an appointment with a dietician. This is the second dietician I have seen in the THREE years I have been unable to swallow anything that cannot completely dissolve without it becoming stuck in the lesions in my throat and choking me. The first dietician, about a year ago now, told me I was too out of her depth, she was new and needed to consult her mentor before posting me leaflets on eating mashed potato and soft diet. Mashed potato does not dissolve, it DOES have a consistency that sticks. For any other unfortunate soul out there with a similar condition to me (there has to be someone on this planet right?) don’t do it. You will have a lot of pain and suffering for little benefit. So yesterday I took that leap of faith (after my GP refused to prescribe me the meal replacement drinks my London consultant recommended, telling me it was too expensive and that the dietician would have to prescribe it. It’s nice to know your consultant is being overridden by the shallow pockets of the NHS. Now I wouldn’t usually complain about this, but I have spent thousands in private healthcare as the NHS declared me psychologically unwell when I first got sick and threatened to commit me to a psychiatric ward if I didn’t go willingly. Strangely enough I was in there for months with no improvement and the only way I found how how sick I was was when I paid an ENT doctor to look down my nose and that’s where the lesions start. Up my nostril, permanent ones in my nasal cavity on the wall between it and my brain, all in my mouth are flares as are my stomach, throat, chest, shoulders, face and back, then of course there’s the permanent bowel ones which cause constant bleeding. To the point that again London told me I needed an urgent iron transfusion before I’d end up needing a blood transfusion. My GP again refused citing I would be in too much pain (?) Again I went privately and they got me in urgently for an iron infusion.) But I digress… we are talking about my second less than successful trip to a dietician.

I was first off sent up two flights of stairs to the wrong place even though I can’t walk far. The dietician (when I was sent to the right place) blamed me for getting lost. After she had a major coughing fit with snot running all down her face from her big red nose (props for being infectious in the presence of a severely immunosuppressed patient there) she started by telling me I had 40 minutes this appointment and 20 minutes for every appointment after. I explained my condition and that all I actually eat is yoghurt, sugary tea, gravy and custard. She agreed this was not sufficient and could me a factor in my recent fainting episodes. She asked had I thought of a blender to which I told her I had bought one a little while ago that cost over £100 as it promised to liquidise all food. Word of warning… peach, potato, banana, apple, brocolli, insert fruit and veg here does NOT turn to liquid in a blender. It goes to pulp which then sticks in your throat and makes you choke if you have my condition, in the exact same place. She then handed me a recipe a4 page which was going to “reform my diet” and that I did not need meal replacements here is an example:

Now why did I not think of that? Oh wait I can’t eat blended banana BECAUSE IT WON’T GO TO LIQUID. The dietician’s response? Take the banana out then. Oh so stay on the exact same diet I am on now because you just said that was inadequate. “Well who in London is qualified to tell you that you need meal replacements? I have been training for four years.” Such a facepalm moment. It could be that I had to have supplements for almost everything, injection of vitamin D, iron infusions amongst many other things that may indicate, that in fact, my diet is exceedingly poor. She finally relented and told me the ensure plus (which was too expensive for my GP to prescribe) was not in her little handbook and I would need another brand (which I note has less nutritional value and funnily enough is on the cheap… go figure). I thought three years of starvation and paying to see my own doctors practically bankrupting myself may have saved me some kind of special reserve up in the kitty. Apparently not.

So I went on my merry way, 15 minutes into the appointment after it became clear she too was out of her depth, and after tried to convince me to leave my GP because it isn’t her responsibility about what can be prescribed either. Imagine my shock this morning when she had spoken to my GP, only to say I am only allowed a two week supply then she has to review me :’) Maybe two weeks of two supplement meal drinks a day (which don’t even total 800 calories) might reform my life enough to never need them again in future? Who knows. I had been paying £50 every four days for the highest recommended meal drinks, but unfortunately my money tree died and went to heaven. So I guess she likes to have you beg for food.

I just want to point out at this moment that the above diet is HORRIBLE. The one I am on is absolutely awful. I feel terrible. I am so pale. I feel frail and exhausted all of the time. I need to put in here that I am not telling anyone my dietary intake to encourage anyone to try it. You will end up starving to death which is basically where I am headed right now.

After my above rant which has been brewing for quite some time, I can also update on my situation with the decline in my illness. So far it has been nearly four weeks that I have been trying to get in touch with my consultant at The Royal London Hospital. Strangely she doesn’t have a dedicated secretary, they only have a few random clinic days where you MIGHT catch someone who actually answers the phone and four weeks worth of possibly one hundred answer phone messages doesn’t seem to do the trick. I was promised (after it came out how low my white blood cell count was, and the fact I am passing out, having nose bleeds, losing a lot of blood, having fevers, having glands so swollen in my neck flaring up that I can’t look down, not being able to keep awake to the point of spending a lot of time disoriented, rapid weight loss, swellings in my mouth tongue and throat more frequently, sore throat and loss of voice, flu like symptoms to the point I often find it hard to stand to go and get medication, vomiting which includes vomiting blood, a new lesion in my nostril which has caused several over 30 minute nose bleeds, ringing in my ears and a host of one off crazy symptoms) that I would be in London that Friday or the following Friday clinic (this was on a Wednesday so I had someone on standby to take me to London at short notice). Friday came and went. I left voicemails to no avail. By the next Thursday someone picked up the phone who put me onto a nurse who then told me that my consultant was in fact, not in that Friday anyway, but that I should get my blood results sent over and someone would call me back before the next week. No one called me back. I left message after message. Eventually a junior doctor called me at the end of the following week and started telling me about “my behcets” I don’t have behcets, the consultant I see just sees a lot of people with behcets. Nice to know they take notice. This lovely doctor told me she hadn’t seen the results and that the only person who was available for another week was the immunologist doctor who could not alter my medication and was not a specialist in my condition. Excellent news! Not. So I asked what I am supposed to do. I can’t go to my GP he is out of his depth. I can’t go to A&E because there are no specialists in my area, so I can’t ask about why after over 10 months now my medication isn’t making a difference and why I am actually at the moment what I believe to be in a rapid decline. She told me I would have to wait another week and see if she can get hold of my consultant. I haven’t heard anything. I don’t even have my next routine appointment and it has been over two months, I am supposed to be seen at least every three. So I am in a situation where I am on a treatment plan that is not to be taken lightly, my blood tests show something is going on which can be attributed to a scary side effect of that drug, but I have no one to ask for help. If I ask for a referral to another consultant the waiting list is months. There has been nothing for it but to spend some time raising funds to get to see another private consultant. I am fuming. Not just for me but for every single soul with a disease like this who is treated like some sort of leper in the NHS. Getting help is like gold dust. There are some wonderful people I have connected with online who have helped me to make a choice in consultant.

I am absolutely broken that human lives get so flippantly cast aside, why? Because this is rare? People I have spoken to are so brave you would not believe what they achieve with their own battles. Most of the problem I believe is down to funding issues or doctors who don’t know something and just refuse to take any time to contact the right people to find out some facts to try to help. I have been told by the people in the group that what is happening to me is serious and I need to be seen urgently.

Finally, I have been told I most likely have a very rare form of pemphigus PV, the disease has it’s hallmarks, it is just unusual to have it where I have. So says my consultant in London. The Houdini with her disappearing acts. I have had so many biopsies to get to that conclusion. My last nasal biopsy ended with me coming out of theatre having a grand mal seizure, possibly due to how many times I had been through anaesthetic in a short space of time. They then proceeded to do colonoscopies on me including biopsies, full ones, without painkillers or sedation. I have had about 6 of those without any relief the rest were before my seizure. I have so much more to talk about with this story. But I feel like I have said enough for now.

People often message me saying why am I not talking to them, why don’t I answer, am I mad at them etc. You know what, if you don’t hear from me I am probably either thinking of ways to try to survive this disease or crying on my own thinking how am I ever going to recover and feeling entirely hopeless.

I feel so so sad that the NHS has come to this. It has done so much good for so many over the years. They saved my life in my early 20’s when I was in a coma. I owe them that I am here now. But things have changed so much since then it is dire right now. To the point where if I didn’t sell half the things I own to get private doctors there is absolutely no doubt in my mind I would have continued to be in a psychiatric ward and I would have died. They just do not have the funds to function properly in my opinion and it breaks my heart.

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Hey, you have been through so much, and I hope you get the answers, attention, and diet options that you deserve. How long have you had this condition? I know I’m a complete stranger, but I want you to feel better and get what you need.

Hi I have had this for three years where it has been chronic but I have recently found letters between doctors where tests indicated I had some activity as far back as 2011 but it was so rare they ruled it out on that basis. The severity to the point of being unable to eat has been three years. Thank you for showing interest, the reason I write is so people can hear about it and hopefully if anyone else (I hope not) has anything similar they may cut out some of the wrong turns I have made. I will be writing more about it as I (hopefully) recover. x